HALP! My taste buds are dead!

When they prepare you for RAI, they tell you, “There’s not really any side effects from the medication.  Oh, you will need to be isolated from other people for like four days.  Well maybe a week just to be safe.  You might want to think about getting some lemon drops, too.  Not the sugary kind, but the good and sour kind.  The doctor will probably want you to have them.  Why?  Just to protect your salivary glands.  Some people get a little dry mouth because the RAI affects those, too.  There’s no pain but you can take ibuprofen if you need to.  You can eat anything you want after 24 hours!  Any questions?”

LIES.  THEY ARE ALL.  LIES.

Okay not really.  But they may as well be.

It’s true, the medication ITSELF does not really have any adverse effects though some people can get nauseated.  If you’re prone to getting sick from meds, or already feeling queasy, ask for some anti-nausea medicine.  But seriously, probably the most irritating thing was not being told any specific instructions about my isolation until THE DAY OF.  I looked almost everything up online, most of it was accurate, thank the gods, and I over-prepared rather than under-prepared (I had an extra human being in the house to help–THANK YOU DADDEO!!), but I really did not know how long I’d have to go without touching anyone.  Or how much longer I’d be on the low-iodine diet.  Or that I couldn’t make food for anyone else during that time.  So, leaking radiation is a pretty important side effect they should really prepare you for at least a couple of days ahead of time so you can make plans!  I, for instance, work.  I am a nurse.  This means I have to touch people.  I am grateful I could take the time off of work for treatment, but what about people who don’t have the vacation time, or have to give so much notice so they don’t get in trouble with their employer?  I am fortunate to have amazing supervisors and that I work for an extremely compassionate company, but that is not true for all people who work.

The lemon drops are a thing.  That’s not a total lie either.  It’s amazing how many they want you to eat, though–2 to 3 EVERY HOUR for two days while you are awake.  Oh, and if you wake up in the middle of the night to pee?  Go ahead and pop another one.  Good gravy make sure you brush your teeth because all that sugar really makes them feel gross, let alone the damage it’s doing to the enamel.  The RAI does affect your salivary glands, and the sour drops do help–except in my case, where I have ZERO issues with dry mouth.  HUZZAH!  I stopped taking them after about 5 hours because I couldn’t take it anymore.  Now, that is MY story–if your doctor wants you to take the lemon drops, DO IT.  Do not stop taking them without consulting your physician.  What I did was a bad thing, not a case study for why it’s OK for you to be non-compliant.  TAKE YOUR LEMON DROPS.  They are tasty.  But yay, no dry mouth!

The other thing?  About no side effects?

BULL.

I can’t taste a thing.  Oh, no, it’s not that I have a metallic taste in my mouth, which was a possible effect I read, again, online.  It’s not cottony.  It’s not “altered.”  It’s GONE.  My taste buds are fried.  Normally anything above “mild” and I’m reaching for bread and milk to make the pain stop. My mother who can eat habenero pepper anything?  I got a southwest style wrap at a deli.  I gave her the leftovers.  I told her it was pretty tasty.  “Whoa–this has quite a bite to it!” … “…What?  I thought it was good but it’s not hot…” “Yes, yes it is.”

Now that’s kind of cool.  Suddenly I can tolerate spicy food.

Except I can’t taste anything else.

Strawberries?  Chewy water.  Pizza?  My most favorite food in the world?  Old cardboard.  Ice cream?  OK most ice cream is still fine.  Because ice cream.  Biscuits?  Buttery old cardboard.  Freeze dried apples, which I loved while on low-iodine diet?  Crunchy aerated cardboard.  Salsa?  Chunky water.

Ironically, I’m eating MORE because I’m seeking flavor.  “If I keep eating this terrible tasting thing I know is delicious, eventually it’ll become delicious again, right?  That’s how this works?”  NO BRAIN.  THAT IS DECIDEDLY NOT HOW IT WORKS.  And I have a pouch the size of an egg for a stomach.  I CAN’T ACTUALLY EAT MORE WITHOUT PUKING.

There is no good follow up comment to that.  Use your imagination.  Or don’t, your call.

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Radiation Leak Contained

I intended to blog about my daily experience of RAI treatment, but I just…couldn’t.  Not only was I nervous about it, but it made me mad–not only did I miss the opening night of How to Train Your Dragon 3 (Toothless = my beloved Emily Cat, may she RIP), but I also had to miss ConVocation 2019 in Detroit, an event I absolutely loved last year and was my first Pagan con.

So now you get my thoughts s/p treatment.

In case you are a person who is looking for information on what to expect because you are also going to receive RAI, I give you this one caveat: every hospital, every treatment center, has its own processes and rules regarding treatment and isolation afterwards.  It also depends on your age, whether you have children at home, and so forth.  This is just MY experience.

Day 1: Thyrogen Injection.  This was basically no big deal–I went to the hospital and got a shot in the ass, with promises of a shot in the other ass to follow the next day.  It does need to go in the ass because it’s a lot of fluid, and even with it going in the big muscle of the gluteus maximus, it stings–but this quickly abates and there were no side effects.  I was sent on my way with instructions to come back to the hospital in 24 hours.

Day 2: I whined until my husband agreed to go with me.  I’m exaggerating–he wanted to support me but wasn’t sure what would be the most helpful since he’s also preparing to start a new job and had training to do to ensure our financial survival vs. holding my hand for a butt shot when I was able to do it the day before like a big girl all by myself. However, I knew less of what to expect this day because it was a two-part adventure.  And I wanted to be greedy and get some alone time with him.  So we went to the hospital, got a shot in the other ass as promised, and we were told to return around 1pm.  Since we were on the West side of Cleveland, which is not common for us, we took advantage of it and went to Great Northern mall for some relaxing shenanigans.  However, seeing an Auntie Anne’s while you’re still on the low-iodine treatment is like a unique form of torture.  Soft pretzel-y happiness…

I went back to the hospital at the appointed time, husband in tow, who was also sleepy with a warm full belly of food court Japanese cooking so he passed out in the waiting room, much to the amusement of the radiology tech, for the second part.  This is basically a low, low dose of radiated iodine so that they can evaluate your uptake and give you the proper amount of radiation to kill off any thyroid cells with the RAI.  You can’t touch the pills with your fingers–and if you can’t swallow pills, you better learn how.  They are not small, they’re like the size of extra strength Tylenol capsules, they cannot be opened, and it does not come in liquid form.  You can take them with applesauce but you can’t chew them.  You get 3 of them.  Thankfully after the debacle of chewable Augmentin as a child that resulted in hours of tears, my mother ensured my ability to swallow pills.  I took them, they told me to be back at ass o’clock the next day, and off we went!

Day 3: Now I was promised that I would be put in a special room, and some CIA shit would go on where they would go behind a lead door, and a container would come out of the wall, and a mysterious voice on the intercom would tell me to open the case and take the pill inside…

None of this happened.

The first thing was getting scanned–whole body scan to evaluate my update of iodine, and SPEC scan with CT to get really good images of the thyroid bed.  THIS IS TOTALLY NORMAL.  If your radiology techs don’t warn you that they might need extra images, don’t freak out.  They just forgot to tell you that your radiologist is persnickity.  This took about an hour and a half all told from the time I checked in until this phase was over.  They told me to come back in six hours.

Well I hadn’t planned on this.  Thank the gods I had taken a cheesy romance novel with me (that was actually kind of charming because the male protagonist was a manly-man but also had the-feels and self-doubt and the female protagonist was in control of her own sexuality despite it being like 1870’s England and she was part of the nobility).  I managed to read all but the last 50 pages before it was time for treatment.

I spoke with the doctor who gave me all of my instructions about my isolation.  Because I do not have small children at home, I did not have to stay in the hospital or at a hotel.  However, I may as well have because I still couldn’t feed anyone, or snuggle with them, or be within six feet of them for more than an hour a day!  And she said I can’t get pregnant for 12 months, although all of the references say 6 months is sufficient.  We’ll see.

I signed my consent forms, and the tech came in…my dose was already in the room in a lead container.  She took it out and placed it in a medicine cup–same deal, no touchy the pill (but it’s ok to put in my mouth?), and swallow.

And that was it.  So anti-climactic.

I drove home, feeling strange to myself, knowing that the treatment would kick in, but I likely wouldn’t feel anything.  Radioactive on the inside but…outwardly, no change.  No glow, unfortunately.  No super powers either, which just seems lame.

I spoke with my parents for my allotted hour when I got home.  As I was talking to them, I started to feel “fireworks” going off in my neck.  It wasn’t really painful per se, just surprising and a little uncomfortable.  Almost like extra prickly pins and needles.  This came and went for the next 12 hours.

Days 4-7: I watched so much American Dad.  And Futurama.  And cheesy Netflix movies.  And did literally NOTHING productive.  I spent an hour a day visiting with family; my dad brought me my meals.  My husband used a stick to give me affection (poking me in the chest with it, petting my head with it, kissing one end of it and then poking my cheek, etc.).  The cats kept their distance for the most part.

Today is the first day I can spend within 6 feet of anyone for more than an hour.  Still no snuggles or spit-swapping, but some touches are OK.  The bathroom is still mine for the rest of the week, and I still can’t prepare food for others.

I just can’t wait to sleep in my own bed.

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I like to “Praise the Sun” When I am in the Hospital Solarium

I was admitted to the hospital.  Again.

Since starting the low-iodine diet I have been twitchy.  Literally twitching.  Like, uncontrollable muscle spasms twitching.  I did, afterall, say that low calcium was a risk on the low-iodine diet, and doubly so for someone who has had gastric bypass and does not absorb calcium well in the first place.

I would like to throat punch my parathyroids for not being fully functioning yet. *ba dum, CHA!*

Thankfully it was a short visit.  A trip to the ER, two doses of IV calcium, tweaking of my calcium related medications, and now the twitching is down to subtle glitches I only notice if I am completely still.

Well and the heart palpitations.  But I’m used to those.

At the end of the hall in the hospital I’ve been admitted to a few times now is a room that is labeled “Solarium.”  My husband plays a lot, and I do mean a LOT, of Dark Souls.  If you have any familiarity with the game, you already know where this is going.  If not, I dare you to google “Solaire Dark Souls.”  There’s also a great music video with a giant corvid and the song “Take on Me.”  Watch it.  It’s ridiculous.

So when I’m in the Solarium during my walks, I “praise the sun” in Solarian fashion.  It does make for a nice stretch.

There was little on the menu I could eat and still remain compliant with my low-iodine diet,  I wanted tacos SO BAD.  Today I finally got them.  If you’re willing to put a little effort into it, your diet can truly be delicious when you are low-iodine.  But Goddess help you if you don’t like to cook.  I used fresh jalapenos for the first time ever today.  My only piece of advice?  Wear gloves or wash your hands REALLY WELL after handling fresh hot peppers.  I’m a Yankee child at heart and by tongue, so a little heat goes a long way–and fresh jalapeno definitely retains more heat than the stuff you get in a jar!  But this Yankee also managed to make authentic Mexican food by herself.  I think my former Mexican patients at the dialysis center would have been proud.  I even fried my own tortilla chips!

Tomorrow I go to a different hospital to begin the process of receiving RAI.  I will get my first Thyrogen injection, and hopefully some more instructions on what to expect.  I do not even know what to ask about, and reading what I should ask about isn’t really helping either.  I know that I cannot sleep in the same bed as my husband, though, and I do not want to expose the cats to excess radiation, so I got an air mattress and sheets for while I am in isolation at home.  Cleaned up my spare room/office/witchy room.  I’m going to sleep amongst the magicks!  My dad is also going to come since I can’t feed anyone else while I am in isolation, or spend much time around people.

Just a few more days and I can eat stuff with calcium in it again.  I miss my protein shakes.  And ice cream.

T minus 2 days to radioactive containment failure…

 

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Give Me that Hypothyroid Life

I blame my anxiety disorder on my thyroid.

My nodule was found when it was already large. It was 2.5cm is one dimension. I can’t remember the other ones off of the top of my head. But, large. That was in 2012.

So you know it had to be there for awhile to get that big in the first place. I started with some anxiety and depression by my senior year of high school in 2002, and it was full blown by the time I was a sophomore in college in 2004. I have been tired and struggled with weight issues all throughout this time as well.

Most telling was the fact that I lost about 50lbs after graduating from college in 2007. Nursing school meant I put about 30lbs back on (people LOVE feeding nurses), and when I went to try to get the weight off again in 2010—it wouldn’t budge. I tried low-carb dieting. I was doing two-a-day workouts with a mix of cardio and resistance training. I was counting every morsel that went in my mouth. Yeah, I got stronger.

But I actually GAINED weight.

And not just “you’re trading fat for muscle” weight. My actual size went up. This was disheartening, and I gave up. I decided life was too short not to enjoy it, and I wasn’t going to torture myself.

Now granted this meant I was putting junk in my body in addition to healthy food. I certainly overate. I ballooned in size, and my anxiety ballooned with my waistline.

As my overall health declined, I went to see doctors. I was diagnosed with sleep apnea. This helped a lot!…but it still wasn’t right. I saw an endocrinologist!…they gave me some Cytomel, thinking it might give me a boost to have some extra thyroid hormone floating around in my system. It didn’t help. They checked my TSH, free T3 &T4, did a FNA of my nodule, ultrasound…everything was normal. Everything was benign. Or so they said.

My anxiety was treated by a counselor in college (who was amazing) coupled with Lexapro. Eventually I was able to get off of the Lexapro, and I stayed off of it for a long time. But, as my health worsened…my health worsened. Life happens, and it became clear I needed something to help with the anxiety and depression again. Lexapro saved my life twice over.

Still, even after doubling my Lexapro dose, I was having major breakthrough anxiety. I was prescribed Xanax. There were times I was taking it every day, and other times I wouldn’t touch it for weeks. Xanax, like all controlled substances, is best when used correctly and not abused for the “high.” Use it for anxiety, not to “feed good.” It’s when we start using it when we are NOT symptomatic that the potential for addiction becomes an issue. And there are some people who are just prone to addiction. Let’s stop blaming each other and do something proactive about addiction.

Anyway.

Then I got my diagnosis. Cancer. Of COURSE I fell apart. Of course I sobbed. Of course I couldn’t believe it—even though I knew, in deep in a hidden part of myself, that I had cancer.

My surgeon got me in ASAP to have the rest of my thyroid removed. It’s been 2 months since the FNA confirming I would need to have a lobectomy. I was nervous and crying leading up to surgery on 12/31/18. I scared myself afterward, waiting for the pathology results. If you’re waiting to hear you have cancer, don’t do research on Google about cancer. That was a bad move on my part.

The pathology came back on 1/14/19. Surgery was 1/16/19 to have the rest of my thyroid out.

And you know, I’ve only had ONE panic attack in the last month?

I have freakin’ CANCER. But they took the offending matter out, and while I’m certainly not happy about having cancer, and yes, I’m scared, I’m not utterly debilitated by it emotionally. I am functional. I am so functional and calm my family is like…wut.

I am still tired easily. My hair is falling out because I’m hypothyroid. My skin is so. Dry.

But I am OK.

And I will be OK.

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Done with Cancer #Capricorn4EVA

Yeah that’s meant to be an astrology pun on having cancer.  I realize its weak.

But maintaining a positive outlook and sense of humor is incredibly important to dealing with having The Big C.  And I love, and I mean LOVE, a terrible pun.

And I have too much time on my hands at work today.  I suppose I should be glad for humanity at large that I am not swamped with hospice referrals, but it does make the time drag slowly.

Precious, precious time I would rather be using with my family or working on personal goals.  However, the work I do in this job is also extremely important to my community.  It’s balance, as usual.  Having cancer does not mean I get to check out of being a human.  I am still fully capable of working, tending my home (mostly).  I can still be nice and do stuff for causes other than my own.  I can still support other people in their journeys, both joyous and terrifying.

I did some more research on just how rare it is that my benign nodule became malignant.  Apparently first-line FNA and US testing only has a 1.1% false-negative rating.  In an analysis of some 800+ nodules, only 4 ever became malignant later on.  The shortest time-frame of discovery from initial assessment to developing malignancy was 2 years.

In other words, the odds were STAGGERINGLY against me having thyroid cancer.

I’d play the lottery if I didn’t have a phobia of it.

No, seriously.  Here, dive into my own special psychosis for a moment…

Apparently there’s a term for people with a fear of randomized numbers.  That’s not exactly what my phobia is.  In fact, I love playing scratch-off tickets.  I shake, however, while I put the money in the machine and press the button for my ticket.  And going up to the counter for a Mega Millions ticket?  NONONONO.  Now, you might think–“Sure, you have anxiety, this must be some form of social anxiety issue.  I hate talking to people too!”

I don’t have a problem talking to people.  I mean, I am a classic introvert.  I am not likely to be the one to introduce myself unless I have to (“Hi!  My name is Ariawn, I am the nurse from hospice here to talk to you today about our services…” and then you can’t get me to shut up).  I will happily go up to the courtesy counter to ask for help at the grocery store.  Walking up to the McDonald’s employee to tell them my order is wrong even if there are 10 other people in line?  Oh yeah, I’m that person (but hey, I’m NICE about it, I used to have that job I know how much it sucks…”Excuse me, there are no pickles on my sandwich.  Can I get some please?”…you get better service this way, too, folks).

Nope.  It’s actually saying words…”Mega Millions ticket, please.”  I hyperventilate.  My palms sweat.  I get dizzy.

At least I save money this way.

Anyway.

If you Google search for information things like low-iodine diet, you’ll find things from 10+ years ago.  It’s amazing to see because 20+ years ago when my mom had her thyroid ablated for Graves’ disease, she never even heard of a low-iodine diet.  Now, she didn’t have cancer, so I have no idea how long they’ve been doing the low-iodine thing for cancer treatment.  However, as soon as 10 years ago, they’re doing the iodine diet, and the number one complaint I see is that NO ONE has any idea how much iodine is in food.  Some resources say strawberries are super high in iodine.  Others say all fresh fruit is safe.  Same with bananas.  Some say you can’t do potatoes, some say you can as long as you don’t eat the skin.

It seems the common consensus is that it depends on how iodine rich the soil was, but even without that, one of the things we haven’t clarified is that LOW IODINE is not the same and NO IODINE.  Less than 50mcg a day is the goal.  The minimum recommended amount is 150mcg.  Ish.

But it’s not like it’s a standard on Nutrition Facts labels.  I saw it on my multivitamin, but it’s certainly not listed on my organic Fruity Snacks from Costco.  (Which ARE low-iodine friendly, and DELICIOUS).

So we go by basic guides.  No dairy.  No seafood.  Limit your meat.  Must be fresh, not pre-packaged with brine.  No potato skins.  No spinach, no broccoli. No iodized salt.  Make sure your salt is NON-IODIZED.  Himalayan pink salt, which is so popular right now?  Some of it is low iodine…some of it isn’t.  You literally have no way of knowing without testing the chemical composition yourself because it is mineralized salt.  It has a mixed composition, which is part of why it’s so good for you if you’re an otherwise healthy person.  Plus the metaphysical benefit from cleansing those nasty positive ions from your environment.

Lick your salt lamp.  I dare you.

Subsisting on fruit and nuts isn’t so bad.

Especially with organic Fruity Snacks.

 

 

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T-Minus 7 Days to Radiation Containment Failure…

I enjoy the drama of it.

I miss theatre.  When I was in 8th grade, the theatre-bug bit me and all through high school I was an addict.  If I wasn’t on stage, I was behind it.  I directed my own show in the Black Box little theatre in my high school.  President of the Drama Club junior year.  Goddess knows I wasn’t the best actress, and my cats cringe when I sing, but I loved it.

The singing is even worse now.

One of the risks of thyroidectomy is vocal chord paralysis.  Now, I am fortunate, because my vocal chords are NOT paralyzed.  But that doesn’t mean they didn’t take a hit from two intubations and the swelling associated with surgery.  I went from having a high range and a low range (with NO middle range) to having exactly one very scratchy note.

I personally think it’s HILARIOUS but it makes my husband cry.  He has a voice like the angels.

In fact, he even starred in Urinetown several years before we met at one of our local community theatres.  I got to see a recording of it–he even did a good job with the gospel number!  When he was in Man of LaMancha a few years ago he sang “Little Bird, Little Bird.”  I went every night to hear him as the beauty of it would bring me to tears.  I wish he would sing around the house, but, he’s strangely shy about it.

I also wish our lives would let us do theatre.  We both miss it.  I may not be able to do a musical, but I can do a play.  Well, that’s not fair–even musicals have chorus lines or non-singing parts, or they need someone who can’t sing for the sheer hilarity of it.  I have no shame, I do not mind people laughing at my croaking efforts.

But, alas.  I am the breadwinner in our marriage, but I also came with a lot of student loan debt.  Therefore, we both have to work, and unfortunately, the lines of employment we’ve gotten ourselves involved in makes theatre difficult.  Theatre is a commitment.  I remember in high school I would get to school at about 6am for Academic Challenge practice (yes, NERD), school ended at about 2:00pm, rehearsals were every day from 3p-6p, and I would work at the pool from 6p until it closed at 9p.  Every.  Day.  And I still graduated valedictorian which means I did homework at some point.  It probably helped that I never had a lead role…

The same is true is community theatre.  There’s a reason tech week is called “Hell Week.”  And if you have a job that you aren’t sure when you’ll be able to get there like in mine?  Or one that takes your evenings as my husband’s does?  And you have a home, and sick family members (including the wife, i.e. me), and want to have children, and you have other commitments you have made as we have to coven and martial arts and other interests?

Well, something has to give.

Next week I start the process of radiation treatment.  It begins with Thyrogen injections, and hopefully they will tell me more of what to expect.  Thyca.org has been useful in giving me a heads up because I need to plan for how to keep my family safe from too much radiation exposure.  My dad will be coming to live with us for two weeks because I won’t be able to prepare food for anyone else, and my mom can’t always get upstairs these days to get her own food.

I need a ranch style home in the worst way.

I am glad I am getting Thyrogen instead of stopping Synthroid for my RAI.  I’m already struggling with keeping my calcium up, let alone being hypothyroid on top of it.  As I sit here my fingers and lips are tingling.

Time for more TUMS.

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Thyroid Cancer has Colors and They Are Pretty

I think I should make a ThyCa My Little Pony Mascot.hiResPony


How awesome is this?  I used the Thyroid Cancer colors and tried to make her vibrant and delightful.

Plus.  My Little Pony.  Amirite?

 

 

Since my diagnosis, it has been extraordinarily difficult to do any reading about it.  I know what I know about thyroid disease primarily through what I learned in nursing school and also talking to my mom about her Graves’ disease.  She had her thyroid ablated with radioactive iodine around 20 or so years ago, so she’s been there, except the experience is vastly different.  She did not have to follow a low iodine diet or have full-body scans.  However, they did more closely follow her bloodwork to adjust her Synthroid dose, whereas I won’t have a TSH done for another month.

There are a couple of things about this that are enough to make a person crazy.

  1. The Fatigue.  Oh my gods.  I have complained about being tired my entire life.  When I was diagnosed and treated for sleep apnea, and I suddenly had energy, it was the most amazing experience of my life.  I should have known something more was going on when that energy began to wane, too.  But even the fatigue of being obese with sleep apnea was nothing compared to THIS fatigue.  I’ve never been big on napping, but I could sleep all day.  I can’t stay asleep.  I have brain fog.  I have zero motivation but have a hefty to-do list.  …After my nap.
  2. Hypocalcemia.  Granted, I’m in the minority. My parathyroids are still stunned, apparently.  When you do a low-iodine diet, you can’t have dairy, and I did not realize just how much dairy was in my diet until I couldn’t have it anymore.  My protein shakes are dairy-based!  And I struggle to get in enough protein even with my 30g/serving shakes.  Of course, when you have a dairy-heavy diet, that means you are getting dietary calcium…that I’m suddenly not getting anymore.  I have been chewing ultra-dose TUMS like cows chew their cud.  I get a good 8g of oral calcium supplements every day, and I STILL had an ER trip because I started having chest pain.  Oh, and I’m also still having random muscle twitches that are irritating to say the least.  I had my dad drive me to work today because I was not sure I wouldn’t jerk the steering wheel.

 

But the strange thing?  I normally have horrific anxiety.  And I have only had one actual panic attack since my diagnosis, whereas prior I was using Xanax almost daily for rolling panic attacks.  I have a feeling my anxiety was heavily related to my thyroid issues.  Plus I do better when I have an enemy I can name.

When we were headed to the hospital to have the rest of my thyroid out, I was actually driving the car–it was a good distraction for me.  You can see the hospital from the freeway, and you actually have to take the exit AFTER and do a horseshoe turn to get to it.  As we passed the hospital, I pointed out my husband’s window and shouted, “THAT IS WHERE MY THYROID GOES TO DIE!”

Therapeutic.

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